I am new here. I have recently developed neurological symptoms (pins and needles, numbness, cold sensations), particularly in my hands and feet, although occasionally in other parts of my body such as legs. I am a vegetarian who eats dairy products and I have Rheumatoid Arthritis and take weekly folic acid supplements as I have been on methotrexate for over 20 years. I have other symptoms such as IBS, constant UTIs, psoriasis on my scalp (and sores in my nasal cavity) and a slightly sore tongue, which made me think I possibly had B12 deficiency, although no-one in my family has pernicious anaemia. I had a blood test last week which shows a B12 serum level of 228.0 ng/L (i.e. normal range), a serum folate level of 8.40 ug/L (i.e. high), a haemoglobin concentration of 111 g/L (i.e. low) and an MCV of 78.7fL (i.e. low).
My GP agreed to prescribe hydroxocobalamin injections (5 doses on alternate days, then one every 3 months); but do you think this sounds like B12 deficiency, and, if so, should I be having more injections until symptoms improve, as per NICE guidelines? Also, how soon would the injections begin to take affect? I think my neurological symptoms have improved since being on the injections (4 so far), although now I am tired at the end of the working week, they seem to 'kick off' again.
I have not had the Serum MMA or Homocysteine blood tests, as I have already started the B12 injections and apparently this can affect the result and deliver a 'false normal'.
I would appreciate any advice or guidance about this (sorry my post is so long!).
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rebs48
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Hi rebs48 I think your doctor is treating you appropriately for a B12 deficiency possibly caused by your vegetarian diet.
Only you will know whether you need additional injections after the loading doses and that will depend on whether your symptoms are still present.
It is not uncommon for some symptoms to appear to get worse before they get better as the B12 repairs the damage done to your system. As to how long this will take will depend on the length and severity of the deficiency - no two people are the same.
Your B12 levels are just inside "normal" ranges but realistically pretty low and it is good your doctor has begun treating you for low B12. The following paper gives the BSH guidelines for treating B12 deficiency / Pernicious anaemia. As you have neurological symptoms you should really be treated with injections on alternate days until no further improvement then injections every 2 months.
Have you been tested for anti-intrinsic factor antibodies to see if you have pernicious anaemia? Whatever the reason for your low B12 you ideally need it to be a whole load higher!
Your MCV and haemaglobin are low. Have you had your iron levels checked too? Not sure if these are low due to your methotroxate treatment or if you may possibly be iron deficient anaemic too.
Not sure what the normal range for folate results is in your area but this does not seem to be overly high, though probably within the normal range. Not sure what this should be for someone on methotrexate treatment, sorry. Methotrexate is a competitive inhibitor of DHFR (one of the folate cycle enzymes) hence why you are on what I imagine are high dose Folic acid tablets. I think the MTX mentioned on this diagram is methotrexate.
Also not sure what effect being on methotrexate would have on homocysteine and MMA levels either, sorry.
Some of your symptoms overlap with those of Folate deficiency so it may be hard to differentiate between a B12 deficiency and any side effects arising as a consequence of methotrexate treatment.
There are loads of helpful links in the pinned posts on the RHS when you log on (or to the right of this thread) if you are on a PC or down at the bottom if you are on a mobile.
Hi Rebs48. Hello and Welcome. First yes, this does sound like vitamin B12 deficiency. As clivealive says, B12 deficiency can be sometimes be caused by a vegetarian diet I think the fact that you are taking methotrexate complicates the picture. Here's what two commentators in the New England Journal of Medicine say about Methotrexate:
'Weinblatt discussed the use of methotrexate for chronic diseases in adults (Feb. 2 issue).1 Although folic acid is helpful in reducing the toxic effects of methotrexate therapy,2 its expanded use may have an unintended consequence.
In large doses, folic acid can correct the megaloblastic anemia associated with vitamin B12deficiency without correcting — and potentially even aggravating — the neurologic abnormalities associated with this deficiency.3 The coexistence of vitamin B12 deficiency and rheumatoid arthritis has been reported.4 In patients with Crohn's disease and ileal involvement, vitamin B12 deficiency is not uncommon.5
With the increased use of methotrexate for various chronic diseases, there may be a greater likelihood that vitamin B12 deficiency will be masked. Such a deficiency should be considered in patients receiving methotrexate who have paresthesia, generalized weakness, gait disorders, or polyneuropathy. It may even be reasonable to screen all patients for concomitant vitamin B12deficiency at the start of methotrexate therapy'.
Robert A. Fogari, M.D.
Susan Hoch, M.D.
Hahnemann University, Philadelphia, PA 19102-1192
So..(and please excuse me I'm short of time so will have to be necessarily brief - but I'm sure others will comment too 😄)...
A serum B12 level below 500 can result in B12 deficency with neurological symptoms - this can present without having macrocytic (large) red blood cells or a positive PA test result. And the methotrexate may well 'mask' macrocytic anaemia (what your GP may - mistakenly - be looking for as the only sign of B12 deficency - it's not.
The low haemaglobin concentration and low MCV are indicative of iron deficency anaemia. Ask your GP to check your ferritin levels - these need to be in the middle of the range for optimum effect.
Iron deficency anaemia will result in microcytic (small redblood cells) - this alters and reduces the size of the cells - and can also mask macrocytic anaemia.
Also - people with absorption problems (which is likely in your case) also have other deficencies. Ask your GP to test vitamin D and magnesium.
Doctors often say results are 'normal' when they're not. It's where the result sits in the reference range that's important. Get copies of your blood results and post them here, together with reference ranges for help with interpretation.
You have one autoimmune condition (RA) so you are likely to have others - pernicious anaemia, for instance. Ask your GP to test anti-IF antibodies. If positve you definately have PA, if negative the accuracy rate is only 50% - you could still have PA (this is called antibody negative PA) - most GP's have never heard of this.
And yes, you're correct - you should be on the intensive regime of B12 treatment because of your neurological symptoms.
I'm going to put some links in at the end of this reply that will tell you the vital things you need to know about B12 deficency and / or PA (it's worth saying that the treatment for both is the same: B12 injections). The information will help you approach tour GP and persuade him to treat you in line with the guidelines. Hilighted the ' its' that are relevant to your case and go through them with him.
It has to be said that GP's are very ill-informed about B12 deficency and PA so you may have to persevere and be persuasive.
About recovery - the key here is getting enough B12 to effect proper neurological repair. It's quite difficult to say how quickly recovery will take place - for some it's quite quick, for others it takes a little longer - the key here is getting enough B12 injections to get and keep well. If symptoms return before the next injection is due this is a sure indicator that more frequent injections are required.
Pleas keep in mind...GP's often insist on trying serum B12 levels rather than symtpoms. Wrong. All the guidelines state treat the symtpoms, not the blood results.
Apologies...have to dash...just wanted to get something to you. You've come to the right place for help and support....lots of knowledgeable folks who will pop along to help 😄.
Post any questions....and let us know how it goes.
Foggyme - that is such a helpful, kind and informative reply. I now realise the picture is more complicated by being treated for another auto-immune disease (RA), taking folic acid supplements and having iron-deficiency anaemia. I will post the copy of my blood results here, in case I have missed something.
I have been trying to follow your story, Seems like you were low b12 and D, had neurological symptoms, then were progressively getting lupus indicators. I seem to have those same situations. My b12 was in the low normal range and D was low. I was given weekly shots of b12 for 1 month then monthly for a total of 5 or 6 months til my b12 measured in range. I still have brain fog and neuropathy feet, toes, hands, fingers and arms. Now all with joint pain, things are getting worse. My twin has lupus so I suspected that bc my symptoms mimic but have no ana or butterfly rash yet. I eat a healthy organic diet and suspect a possible emerging autoimmune to have caused my vit levels to drop. Have you been ridden of your symptoms and have a conclusion of the cause?
Hi gg317. Good luck with trying to follow my story...I have trouble doing that myself 😖😉😀.
In short, initially, undiagnosed then undertreated B12 deficiency.
After much persistence over the last two and a half years - and consultations with - oh - eight different 'ologies' - now been diagnosed with undifferentiated connective tissue disease (1:1600 ANA and 1:1600 C-ANCA) with features of Lupus, Sjogrens and RA. Awaiting lip biopsy to rule Sjogrens in or out.
Been on steroids since last Christmas and started immunosuppressants eight weeks ago - could take up,to a year for full effect to take place.
So...some things have improved but still very symptomatic for other things. And getting plenty of B12.
Not sure why your B12 injections were stopped...once injections have started, serum B12 levels are meaningless (shots push your B12 levels up - they should be high). So, serum B12 levels do not indicate how effective the treatment is. The only thing that does that is relief from the symptoms. So, your doctors should be looking at symptoms, not your serum B12 levels. If you still have symptoms, you should still be having injections.
Peripheral neuropathy caused by B12 deficiency (if that is why you have it) should be treated with intensive regime of injections (every other day until no further improvement). It would also be usual to refer to a neurologist to rule,out any underlying causes for the neuropathy (cause there are many potential causes, not just B12 deficiency).
Because of your family history of autoimmune conditions, it would be usual to test for pernicious anaemia (an autoimmune condition and one potential cause of B12 deficiency). The usual test is IF antibodies - but 40%-60% of those with PA test negative, so a negative result does not rule out the possibility of pernicious anaemia.
Also - have you seen a rheumatologist for a full assessment of your autoimmune status (especially in view of your fs ily history). It is possible to have something called seronegative autoimmune disease, in which antibody levels are normal - but symptoms and disease process is present. If this is the case, a rheumatologist can make a diagnosis based on family history, your medical history, and symptoms. If your health is declining, might be worth asking for s referral to a rheumatologist for assessment.
And certainly, I'd revisit the B12 issue with your GP.
Good luck with whatever you decide to do...and put up a new post if you need anymore advice (especially if you have what may be the symptoms of B12 deficiency and have trouble getting your GP to treat you).
I had to read your reply several times, seems to me that low vitamin levels may be a result of emerging autoimmune disorders. I was also low on vit D, which I found ironic bc of my daily exposure of folgen sun. My neuropathy was assumed to be a result of the lowB12, but now that my levels are up ..my dr stopped my shots and I have had joint pain in conjunction with pins and needles neuropathy. I tested negative for ana, so my dr says I have fibro and referred me back to the neurologist. I was never tested for PA.
gg317. Absorption problems can indeed be due to an emerging autoimmune condition...the main one being pernicious anaemia. And autoimmune conditions tend to arrive in clusters, so you could well have another underlying autoimmune condition too.
About the B12...your GP should not ha r stopped your injections because your serum B12 levels returned to 'normal' - the. Or al reference range no longer applies once injections have been given.
You have previously been diagnosed with B12 deficiency, you still have neurological symptoms, so you should still be receiving B12 injections.
I'm going to paste in some links that will give you more information about B12 deficiency. Look in particular at the BSH guidelines for diagnosis and treatment, the BNF prescribing instructions, and the UKNEQUAS B12 treatment alert.
By stopping your treatment for B12 deficiency whilst neurological symptoms are present, your GP is exposing you to the potential for irreversible neurological damage. And it's even more astonishing since there has been recognition that your symptoms are due to B12 deficiency.
It’s also,worth noting that neurological repair takes a lot longer than other forms of repair.
The treatment for B12 deficiency with neurological symptoms is 6 x loading doses and the injections every other day until no further improvement - this can take for up to two years.
Your GP may not have heard of this neurological regime of treatment. It’s the third paragraph down in the BNF (included in the links below).
Your GP may also say that this is only for those with PA, and we don't know if you have that. Well, this is a moot point...the treatment for PA is treatment for the B12 deficiency it causes...so the treatment for B12 deficiency (from whatever cause) is the same - B12 injections.
So...suggest you see your GP ASAP and discuss re-commencing your B12 injections - the intensive neurological regime. You may have to highlight and take information from the links below to support you case - many GP's are not well-informed about B12 deficiency.
Put up a new post if you need more help or I formation (this one is 9 months old and will not be seen by anyone else in the forum so,you'll get a better response via a new post).
onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
oh lord! I was not exactly deficient but low at 215, they probably only treated me bc of my symptoms. will it take 2 years to get my mind back too? My memory is awful lately. My gp is suggesting my symptoms to be from fibro and not b12.
Fibromyalgia is often a 'label' plucked out of thin air by GP's who have run out of ideas...or don't understand B12 deficiency, which is often misdiagnosed as fibromyalgia (thought fibromyalgia does obviously exist as a condition in its own right).
But the low B12 came first...and doesn't appear to have been treated adequately. And certainly not in accordance with existing guidelines (which many GP's have not read).
In your case, a serum B12 level of 215 is indeed low enough to be B12 deficient (B12 defieciency can also be present at B12 levels at the top of the reference range).
Serum B12 level is a very blunt instrument for assesssing B12 deficiency - symptoms should always take precedent over serum B12 levels - and where neurological symptoms are present, treatment with injections should begin immediately, even when serum B12 levels appear to be in the normal reference range (see UKNEQUAS B12 Treament Alert in the links above).
So...if your GP has settled on fibromyalgia as a diagnosis on the basis that your serum B12 levels have been raised by the injections but you still have nuerological symptoms....hmmm....not good.
About the mind and recovery. B12 deficiency is a trick little monster because we all ha e different symptoms and we all seem to recover at different rates.... and need different frequencies of injections to get and keep well.
Some people notice improvements immediately, and for some it takes a little longer. And some symptoms disappear before others: neurological repair takes the longest. The two year time frame is suggested as the end point after which little further neurological improvement will take place.
The thing about treatment for B12 deficiency is to have enough B12 to get and remain well. For each person this will be different (injection frequencies reported here range between twice per day and every three months). Though trying to get a GP to prescribe a frequency that suits an individual and enables them to remain well is often quite difficult if it's outside of the arbitrary regime prescription currently in place.
Worth trying to remember...did you notice any improvement following your B12 injections (assume you had the six loading doses too)...and did you get worse once your injections stopped (sounds like you did). If so, that’s counted as a successful theraputic trial (the success stopped when the injections stopped) and under these circumstances and in accordance guidelines, treatment with injections should have been continued (rather than fibromyalgia being used as a label).
So...have a read of the information and try approaching your GP about this again. Some have success by putting in a written formal 'B12 treatment appeal' which includes evidence from the links above. Might also be worth pointing out that under-treatment of B12 deficiency can lead to a potentially irreversible neurolgocal condition called subacute degeneration of the spinal cord...and that you are concerned that you may be exposed to developing this (not suggesting you have this but most GP's have never heard of it and it might just sharpen your GP's thinking a tadge).
So, back to the mind and the fog...will it take two years to get it back...probably not. Some say that their fog lifted quite quickly. The key seems to be getting the right amount of B12 to get and keep well...and that’s different for everyone. And not overdoing it in the early stages.
And it’s not always easy to persuade GP's to prescribe the amount some people need to get and keep well.
Some turn to self-injection, as a last resort, if all else with GP's fails.
So...fibromyalgia...hmmm, not convinced.
B12 deficiency...a distinct possibility, but the only way to know is to start the intensive neurological regime (as per all the guidelines) and track symptoms via a symptoms diary so that improvements can be monitored...and used as evidence for your GP.
Good luck, do a new post if you need more help....👍
omg, I think you may be right in that I have gotten worsening symptom since my monthly injections have stopped! I mentioned that I am worse to the dr at the last visit.
Highlight anything that's relevant to your case (focus on treatment for those with Neuro symptoms, problems with serum B12 test - to diagnose B12 deficiency and inappropriateness of use following injections, successfull therapeutic trial etc.)
Raise the issue of subacute degeneration of the spinal cord - a potential consequence of untreated or undertreated B12 deficiency (in light of the successful therapeutic trial and your subsequent decline since B12 treatment was withdrawn, you are now concerned that you might be at risk of developing this)
Make a bullet point list of things you want to raise with GP to support treatment appeal - link each point to some highlighted evidence so that you can show it quickly.
Make a double appointment so that you have time to discuss properly (if your surgery will allow this).
If you are able, get someone to go to this appointment with you. If they can read your information ab be prepared to step in to support you, even better. GP's are often more attentive and potentially less hostile,if a witness is in the room. Sad. But true. Unless you're one of the lucky ones who has a good GP who is prepared to listen and learn.
Don't be disheartened if the appointment doesn't result in getting the correct treatment (every other day injections until no further improvement). And don't give up.
Next step would be to put a treatment appeal In a formal letter. Same scenario as above - make your points and support them with evidence -highlighted documents can be included along with the letter.
Your GP will have to read all your concerns, and all the information you include, since this will now be entered in your medical records...and having been made aware, your GP is accountable for outcomes.
Might be a good idea to say that if they are unable to grant your treatment request and treat you in accordance with the BSH guidelines, in line with evidence based practice, please can they provide evidence to support that decision (they won't be able because there isn’t t any).
Depending how your initial meeting goes (and how brave and/or desperate you are feeling) you might add that if you do suffer neurological damage because of lack of treatment, you will hold them accountants lie and liable. (Some do this, some don't -only,you can know what approach is right for you).
Worth keeping in mind that there is no point in testing your serum B12 levels to see if you are deficient, at this point (something your GP may mistakenly suggest). Following injections, B12 levels can be raised for many months (six or longer, in some cases) and cannot therefore be used to diagnose deficiency (which will still be present). As above, symptoms are the things your GP should be assessing, not serum B12 levels.
Also worth noting that in view of your other deficiencies, an absorption problem is the most likely present...again, supporting the diagnosis of B12 deficiency.
Also - have you ever had your folate levels tested? Vitamin B12 and folate work together so if folate levels are deficient (or low in the range) the body cannot utilise B12 properly. Might be worth asking your GP to check your folate levels (ferritin, vitamin D and calcium are other deficiencies frequently seen -as you're getting worse, might be good to check too).
If you have gastric problems it would be usual to be referred to a gastroenterologist for further investigation (especially if absorption issues are present - and it sounds like they are).
Good idea to continue with the neurologist. There are many causes of peripheral neuropathy and it would be useful to rule out any potential underlying causes. Again, and MRI scan of the head and spine, together with nerve conduction tests would be usual. And a full neurological examination. Be prepared that not all neurologists know very much about B12 deficiency either, unless you 'hit lucky'. So, go with points and evidence...and a pal, if possible.
And finally...if it was me I'd try to get the fibromyalgia 'disgnosis' removed from your medical records until the B12 deficiency has been properly addressed or until this has been appropriately diagnosed (usually by ruling out everything else - including underlying autoimmune conditions...and this can only be done following appropriate referrals to a range of specialists.
Also -worth checking out thyroid to. Many people with B12 issues (and autoimmune history in family) also suffer from thyroid issues. Most GP's only check TSH but true thyroid status can only be assessed via testing TSH, FT3,FT4,and the thyroid antiobodies TPO and Tg (to test for autoimmune thyroditis -Hashimoto's). GP may refuse but these can be tested via private blood tests if you're struggling and think this may be a problem (or ask you GP to refer you to an endocrinologist).
Sorry for all the words...I'm acutely coscious then you appear to be where I was several years ago. And I struggled for many years because my (now ex-GP) once pulled the fibromyalgia label out of thin air (no tests, no examination). Thereafter, every time I had what I now know was a disease 'flare' I was told 'fibromyalgia'...nothing to offer you. So the B12 deficiency was never picked up either.
So...please be brave...sometimes it feels like a real battle having to challenge medics -however nicely - but you're worth taking seriously...and you have a right to be as well as you can possibly be.
So good luck...be really keen to hear how it all goes...and...again...do a new post if you need help or support in the future.
Foggyme (and any others) - here is a copy of my full blood test results from last week (before I started the cobalamin injections). Would these results fit with B12 deficiency? (NB I have been taking 5mg folic acid supplements weekly for over 15 years to counteract the methotrexate @ 7.5mg weekly):
Total white blood count 10.3 10*9/L [3.9 - 10.2]
Red blood cell count 4.30 10*12/L [3.9 - 5.2]
Haemoglobin concentration 111 g/L [120.0 - 156.0]
Haematocrit 0.340 L/L [0.355 - 0.455]
Mean cell volume 78.7 fL [80.0 - 99.0]
Mean cell haemoglobin level 25.8 pg [27.0 - 33.5]
Red blood cell distribution width 15.4 % [11.0 - 16.0]
rebs48 - you can mention someone by typing @ followed by the name and when their name comes up clicking on it - this should send them a message - but otherwise they may not see the reply.
Foggyme , taka and clivealive - rebs48 has posted blood results - definite signs of iron based anaemia in the results - folate levels bit non-descript - suspect they are actually on the low side which would fit with the methotrexate
would have suggested trying to clarify B12 with MMA (homocysteine might be inconclusive as problems with folate would have raised levels) prior to start of treatment but that boat has probably sailed.
Low haemoglobin, haemocrit, haemaglobin concentration and MCV indicative of iron deficency anaemia. RCDW towards the high end supports this (can also indicate folate and/or vitamin D deficency).
Also - your ESR is raised - indicative of inflammation - your RA perhaps?
B12 is in what's called the 'grey' zone - within so called 'normal' limits but low enough to cause symtpoms of B12 deficency with neurological symtpoms (GP may not know this - as per perevious reply).
And while I think about it, here's the link to the information about methotrexate, folate, B12 and PA from earlier posts. You might want to do a screen shot for your GP - they're often quite dismissive of what they call 'stuff on the Internet' so it'll be useful for you to be able to demonstrate a reliable source:
If your doctor is going to check your iron levels it may be a good idea to not just rely on testing ferritin as this can be raised due to RA, even when your iron levels are low. Checking some of the other iron tests eg serum iron and total iron binding capacity etc would give a clearer idea of what is going on.
taka Gambit62 Foggyme , thanks for the helpful responses to my blood test results. My rheumatologist has booked an MRi scan for my neck as this is also affected by RA although this would not explain the pins and needles in the feet and legs. Would this show a sub-acute combined degeneration of the spinal cord?
Thanks, Foggyme and taka , I'll speak to the GP and maybe ask the consultant to arrange this, just in case. It may show in the cervical spine results anyway.
Erm not sure to be honest - I know very little about MRIs, sorry (I'm not a medic). Sub acute combined degeneration of the spinal cord seems to occur in the cervical and / or thoracic spine so I guess if they are looking at the neck (cervical spine) there is a chance it may show up if present. Maybe ask your rheumatologist if this scan would also pick it up? Sorry I'm not much help.
Apologies, Foggyme and taka , for all my questions and thanks for your patience (I'm new to this!). I read a couple of your replies on other posts which were useful. I am currently on a regime receiving 1mg cobalamin on alternate days (5 x 1mg in total) before 1 x 1mg every 3 months. What is the correct regime of B12 injections for B12 deficiency with neurological symptoms? In one of the posts, you said 5 mg (5 x 1mg) on alternate days before improvements, then 1mg every 2 months. Should I be asking my GP for this? I should have had the MMA blood test before I started the B12 injections, but my GP seemed to think I should have the IFA blood test (not MMA or Homocysteine) and this could be taken any time. Also, should I ask to have iron (ferritin) tablets, as well as the folic acid supplements for maximum efficacy?
The neurological regime is 6 x 1mg hydroxocobalamin on alternate days (the loading doses) then 1mg every other day until no further improvement (for up to two years) then 1mg every eight weeks). Has to be said though that every eight weeks is not enough for some people for the long term - but think about that later - just focus on getting the neurological regime for now. So yes, this is what you should be having.
Note - your GP may say ah ha, but you don't have macrocytic anaemia (what he'll expect to see in PA) - well, your iron deficency anaemia will reduce the size of red blood cells so the large cells associated with macrocytic anaemia will be changed by this - made smaller. Also your GP may be unaware that B12 deficency with neurological symptoms can present without macrocytic anaemia and without a positive PA (anti-IF antibodies) test.
Your GP is not quite right - while the anti-IF antibody test is the test for PA (which you should have) MMA and homocysteine levels will be raised in the presence of B12 and / or folate deficency and are often used when B12 results appear 'normal' to ascertain if a B12 deficency exists. In your case this would have been very useful since your GP may argue that as your levels are in the 'normal' reference range, you don't have B12 deficency. This of course is wrong (see replies above) so you may have to go prepared to present your case, with evidence, to get the right treatment (the link I gave in the first mail will provide all the evidence you need to do this).
Be aware - the anti-IF antibody test is a quote unreliable test (but nothing better exists). If it's positve, you definately have PA. If it's negative it's only 50% accurate, so you could still have PA - this is called antibody negative PA - and you GP has most likely never heard of it (see the diagnostic flow chart in my first reply).
It's also worth noting that B12 deficency can have causes other than PA, though your GP may not know this. The treatment for PA and / or B12 deficency (whatever the cause) is the same: B12 injections. And the golden rule is - and all the guidelines state - treat the symptoms, not the blood results. You have neurological symptoms associated with B12 deficency, you need the neurological regime of injections - even if you test so called negative for PA.
And yes, you need a three month course of iron tablets to address your iron deficency anaemia. And as taka says above, it would be a good idea to ask your GP to do a full iron panel to assess true iron status. It's possible to have low ferritin (the protein that binds iron for absorption) but still have high iron levels in the blood, which could potentially cause iron overload - which would not be good. Ideally, your GP should do this both before iron supplementation and then again three months after the course of iron supplements.
Have to say, B12 deficency and / or PA are quote complex conditions so please don't worry about asking questions. All here started where you are (we Admin's included) so can well remember how confusing and frightening it was (still is sometimes), especially when GP's are so ill-informed and often fail to diagnose and treat us deficients properly.
So ask and post away...lot of lovely knowledgable folks in the forum who will always pop in to help.
Excellent reply, Foggyme , thanks so much to you and others for your helpful advice, which is particularly important when I am feeling a bit apprehensive and vulnerable. I'm going to the GP's tomorrow morning, armed with this useful information. I will let you know how I get on.
Just got back from the GP who has been very supportive. Having read the patient.info print-out I gave him (!), he agrees that there is a grey area for B12 deficiency with RA, methotrexate, folic acid supplements and iron deficiency anaemia complicating my blood results, with the result that we are continuing my B12 injections on alternate days for a further fortnight before another review appointment with him. I will also have a blood test for my ferritin levels, folate levels, another full blood count, TSH and T4 (to check for hyper- or hypothyroidism), ESR as it was raised (plus CRP), and magnesium and Vitamin D as Foggyme suggested. He also is requesting an IFA test, but is aware that this will be affected by the B12 injections and also I could be in the 25% who have sero-negative PA. I mentioned the homocysteine test, but he didn't go with it and hadn't heard of the active B12 test. We both think that the initial symptoms of paraesthesia in my left hand with pains in neck and shoulder could be a separate RA-related cervical spine nerve root issue as I am still having pain in that area, although the pins and needles elsewhere have improved substantially after the B12 injections. He is also writing to the Rheumatologist as he thinks they should organise some neurological tests for me. So some progress, although no official diagnosis which I would prefer. Maybe I will never get a diagnosis if I am a 'grey area' patient.
Thanks to everyone for your advice and guidance as it made me more confident in the surgery. I am very lucky to have a really good GP who actually listens too.
I'm not sure whether my B12 injections are working any more, as last week I felt much better after just 3 injections (hardly any pins and needles), and now after 6 injections, my pins and needles have returned (although more reduced than before the treatment). Is this normal, Foggyme and taka or maybe I am just not B12 deficient after all? Also, I am due my IFA blood test tomorrow before my next B12 injection tomorrow - would it be better to wait until Monday to have the IFA, i.e., 3 days rather than 2 days before the B12, as I don't want my injections to affect the results?
Hi rebs48. People here often report that symptoms can feel,worse before they feel better. Nobody really knows why but the thinking is that it's to do with the nerves 'waking-up', receiving stronger signals, and the brain having to re-learn how to interpret those stronger signals. So what you're experiencing is not unusual. The fact that your pins and needles are reduced is good news and nerve repair does take longer that some of the other symptom relief obtained after treatment with B12. And it's quite early on in your treatment...so bear with it and don't get too dispirited 😄.
About the IF test - best to leave a gap of one week following a B12 injection to avoid potentially skewing the results.
Hi Foggyme , @taka, @Gambit62 and others. I've just had the results of Friday's blood tests back (the IFA test is not back yet, but I had that shortly after my B12 injection so I don't know if that will be particularly informative anyway). As you can see, my ESR has come down from 30mm to 11mm, I am low on Ferritin and Vitamin D deficient - does this suggest an absorption problem? Could this be related to B12 deficiency? I am feeling a lot better with very reduced neuro symptoms (touch wood) after having 8 x B12 injections with a few more in the pipeline. I would be really grateful for any feedback.
CRP
Serum C reactive protein level < 4 mg/L [0.0 - 6.0]
ESR
Erythrocyte sedimentation rate 11 mm [3.0 - 9.0]
Above high reference limit
Full blood count
Total white blood count 4.7 10*9/L [3.9 - 10.2]
Red blood cell count 5.00 10*12/L [3.9 - 5.2]
Haemoglobin concentration 126 g/L [120.0 - 156.0]
Haematocrit 0.396 L/L [0.355 - 0.455]
Mean cell volume 79.6 fL [80.0 - 99.0]
Below low reference limit
Mean cell haemoglobin level 25.4 pg [27.0 - 33.5]
Below low reference limit
Red blood cell distribution width 14.5 % [11.0 - 16.0]
Hi rebs48. Yes...a new post is always best for 'new' things.
The only reason I saw your post was because you tagged my name...if you reply to an old string (as here) it will only be seen by the person you are actually replying to (and those tagged in the message) or by anyone who happens to follow the post.
None of our lovely forum members will spot you...and oh...all that lost advice 😖😄
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Sub acute combined degeneration of the spinal cord seems to occur in the cervical and / or thoracic spine so I guess if they are looking at the neck (cervical spine) there is a chance it may show up if present. Maybe ask your rheumatologist if this scan would also pick it up? Sorry I'm not much help.
Folate and B12 levels recent blood test results
Recently diagnosed B12 deficient
Low folate (again) B12 normal - challenge results
B12 and homocysteine
Low Folate and B12 injections
